Abstract
Intentional relationship building through shared governance, clear communication, and recognition of the fluid nature of power dynamics is needed for occupational therapy researchers to collaborate with members of disability communities as equal partners.
People with disabilities (PWD) have been called an “unrecognized health disparities population” (Krahn et al., 2015, p. S198), yet they are often left out of health disparities research and clinical agendas. A growing body of evidence indicates that PWD experience physical, informational, attitudinal, structural, and financial barriers to health care access. Negotiating the health and social service systems is a vital but often unrecognized occupation for PWD (Magasi, 2012). In partnership with the disability community, occupational therapy practitioners can play an important role in developing population-based interventions to support the complex occupation of health management to support health, well-being, and participation in other occupations (American Occupational Therapy Association [AOTA], 2016). Although health management and health care access fall within occupational therapy’s scope of practice, there is a need for evidence-based interventions to support people’s abilities to perform these roles independently.
To support health management, a multipronged approach—one that unites clinical care providers, academic researchers, and members of the disability community—is needed to break down barriers to health care. The disability community is demanding decisional control over how health care and research are organized to address their needs. The occupational therapy profession has been called on to work alongside the disability community to tackle environmental barriers that reinforce social oppression (Kielhofner, 2005; Magasi, 2008a; Mirza et al., 2016). To do this in a way that honors the experiential knowledge of PWD and holds practitioners accountable to the communities they serve, it is critical for the profession to incorporate a disability studies–informed approach (Magasi, 2008b). Use of community-based participatory research (CBPR) partnerships is one way to integrate disability studies principles into the occupational therapy research agenda.
Recognizing the unique strengths of each team member, CBPR prioritizes the equitable and active collaboration of diverse stakeholders, especially community members, throughout all stages of the research process to improve the health and well-being of a community (Israel et al., 2013, 1998). CBPR with disability communities must include their perspectives, lived experiences, and expertise at every step (Danieli & Woodhams, 2005; Kitchin, 2000; Oliver, 1997). Although the goal of CBPR—to create meaningful partnerships between academic researchers and community members to address health and participation—is laudable, the processes for conducting deeply engaged equity-focused research are less clear. A small body of qualitative research has examined the contextual factors, ethical challenges, and group processes of CBPR research teams (Belone et al., 2016; Mayan & Daum, 2016; Newman et al., 2014; Paradiso De Sayu & Chanmugam, 2016; Wilson et al., 2018), yet little is known about these processes within disability and academic occupational therapy research partnerships. Therefore, the purpose of this qualitative study was to understand the group dynamics and relational processes of a CBPR team in the context of an intervention research grant to support health management for PWD.
Method
Design and Context
We used an embedded ethnographic methodology (Lewis & Russell, 2011) to understand the group dynamics and relational processes of a CBPR team during the intervention development and pilot study phases of the Our Peers—Empowerment and Navigation Supports (OP–ENS) study (Magasi et al., 2019). Ethnography grounded in embedded research enabled us to draw on traditional immersion fieldwork practices while accommodating the embedded nature of our project, that is, an ethnographic study of a reflexive and dynamic research team (Lewis & Russell, 2011).
OP–ENS is an evidence-informed, manualized peer health navigator (PHN) intervention for Medicaid beneficiaries with physical disabilities in a large urban area. PHNs are adults with physical disabilities trained to help PWD break down barriers to health care. OP–ENS was developed in collaboration with disability advocates from a center for independent living (CIL) and a fledgling managed-care organization (MCO) created in partnership with the CIL to serve Medicaid beneficiaries with disabilities. OP–ENS was part of a 5-yr intervention development grant divided into three distinct phases: (1) development, (2) pilot test, and (3) evaluation (Figure 1). The development phase emphasized tailoring the active ingredients of the OP–ENS intervention and creation of the PHN training curriculum. Considerable time was devoted to this phase. The pilot test phase involved implementing the OP–ENS intervention and study protocols with a small group of MCO clients (n = 15).
Amber M. Angell, an occupational therapist and CBPR researcher, was not part of the OP–ENS development team and, as someone “independent from, but familiar with” (Lewis & Russell, 2011, p. 400) the project, was well situated to lead data collection. The 9-month ethnography took place during the OP–ENS pilot phase (December 2016–August 2017), 3 years into the grant. Participants were able to reflect on both the development and the pilot phases. At the time of the study, the State of Illinois had been without a budget for 3 years. Given that in the United States, states are largely responsible for administering Medicaid and community-based services for PWD, this resulted in considerable service cuts and instability for PWD and threatened the solvency of the MCO.
Participants and Procedure
Angell recruited 9 members of the OP–ENS intervention team (6 academic team members, 4 of whom are occupational therapists by training; 1 MCO team member; and 2 CIL team members), conducted in-depth interviews with team members, and observed team meetings. Table 1 contains additional information about the participants’ roles and salient identity markers. In line with CBPR norms, four authors of this article (Susan Magasi, Christina Papadimitriou, Judy Panko Reis, and Tom Wilson) were part of the OP–ENS team and participants in the ethnography (Lassiter, 2005). The study was approved by the University of Illinois at Chicago’s institutional review board (IRB), and all participants provided informed consent.
Study
Note. AT = academic team; CIL = Center for Independent Living; DS = disability studies; IL = independent living; MCO = managed care organization; OTP = occupational therapy practitioner; PI = principal investigator; PWD = person or people with disability.
DS is a cross-disciplinary academic field focusing on the social, political, cultural, and economic factors that define disability in society. For more information, see https://disstudies.org. bIndependent living is a social movement based on consumer control for PWD. It envisions a world in which PWD participate equally. For more information, see https://ncil.org/. cMCOs are health care provider organizations that provide appropriate, cost-effective health care.
Data Analysis
The data corpus consisted of 9 interviews and 27 sets of field notes. We used thematic analysis to analyze the data (Braun & Clarke, 2006, 2013). Two members of the research team (Angell and Alli Ferlin) transcribed audio recorded interviews verbatim, read through the entire data set separately, generated codes, and developed preliminary themes. Magasi conducted additional inductive conceptual coding, engaging in interview reviews and discussions of themes with all authors during the drafting of this article. Agreement was reached by means of a simple group consensus (Saldaña, 2015). Member checking of themes with team members strengthened the credibility of the findings (Creswell & Miller, 2000).
Findings
The CBPR collaborative processes were built on a foundation of trust and a broadly shared vision of the power of peer support to promote health management and health care access for PWD. The team encountered tensions during development and pilot testing. Specifically, issues surrounding the integration of OP–ENS across three organizational partners—academic, CIL, and MCO—with different priorities and perspectives led to tensions regarding shared governance, communication, and the focus of project activities. Participants also described the “hidden work” in which they engaged to support the project that was not fully recognized by others (Hart, 2011). Ultimately, the success of the project was sustained by a willingness on the part of all parties to flexibly adjust to changing conditions as well as their deep commitment to the project’s aims.
Trust and Long-Term Collaborative Relationships
OP–ENS was founded on a long history of collaboration between the academic researchers and disability community partners at the CIL around issues of health care justice for PWD. CIL Representative 2 (CIL2; see Table 1) highlighted the strengths of the relationship:
Among [the academic team] and [the CIL] we’ve had an ongoing relationship, and I think there’s a lot of respect and understanding there—understanding built up over time, ’cause, we’ve had our disagreements, too . . . we’ve worked them out. . . . We know what processes and how to talk things through.
This foundation of an equal, reciprocal partnership and a history of negotiating challenges cemented the relationships on which OP–ENS depended. It also enabled the team to flexibly respond to challenges that arose over the course of project.
Negotiating Shared Governance
Consistent with the principles of partnership outlined as best practices for CBPR, the team sought to create a structure of shared governance that honored the unique strengths and contributions of the collaborating entities and the people within them. According to Academic Team Leader 2 (AT2), “We believed in shared governance, shared leadership, because we assume that we all have the same values and the same perspectives, and everybody knows everybody, and everybody loves everybody’s work. We respect it.”
The disability community partners valued the academic team’s commitment to ensuring that equity—economic and decisional—permeated all aspects of the OP–ENS study design and implementation. For CIL Representative 1 (CIL1), equity included placing the right people in the right roles:
[The principal investigator (PI) is] one of the most inclusive researchers I’ve ever worked with in terms of going the extra 100 yards or whatever to get money for the community . . . . I’ve never worked with anybody who’s gone the extra 9 yards, trying to make sure the community never gets the short end of the stick . . . which we understand is not easy when you’re working with a university that’s looking for every penny. . . . I think she’s really good at recruiting top-notch people in whatever stakeholder level she’s at.
However, decisions ultimately had to be made by academic team leaders on the basis of science, logistics, and a view to the overall project aims. Given team members’ specialized areas of expertise, it was occasionally challenging to cede this responsibility. For example, Clinical Coordinator 1 (AT3; see Table 1), an occupational therapist with more than 30 yr of clinical and supervisory experience, recognized,
This is the PI’s research. No matter how invested I am in it. No matter how much I feel like I may know more about certain pieces of it. I cannot make any decisions, which has been frustrating . . . and then going to the PI and her being really open to, “Okay, yes, this is an important thing we need to talk about.”. . . Also knowing . . . when other people need to be accessed and get their input. From a political standpoint, or just a clinical standpoint, or whatever.
This humility and commitment to learning were essential to the academic leadership team’s ability to foster collaborative processes given that tensions inevitably arose in the process. AT2 described integrating reflective practices:
We were trying to figure out . . . how to lead by not oppressing anybody. That was tricky. . . . [The CIL] was making sure that we were not being ableist, or we were not forgetting the disabled [population’s] point of view . . . that’s their job. . . . I’m here to tell you that, emotionally, I felt that we were being tested every time we had these meetings. . . . When I go into a team where everybody has their own perspective and comes to it from their own life experiences or, you know, the advocacy hat versus the clinical, managed care organization hat, it might be important to start with, “Let’s just talk about what we take for granted.”. . . I’ve gotten to be better at listening, rather than listening to fix something.
This willingness to grow with and through the process was essential to the team’s success. This growth mentality was particularly important as the team grew and integrated new partners and perspectives.
Emergence of Tensions Within the Team
As the OP–ENS project moved from grant-getting to implementation, the partnership expanded to include the MCO. This altered the group dynamic and affected working relationships as issues behind the scenes created a ripple effect on the project. AT2 reflected on how adding a new organization created unforeseen new challenges:
Bringing in the MCO, is kind of what has shifted. . . . The two organizations [CIL and MCO] had a history . . . and that history was not great. So, I think part of what we were experiencing was potentially based on that history. . . . That was something that we were not 100% clear on, and now, looking back, we understand . . . but it was harder to process in the moment.
These challenges were due in part to the reality that each partner had their own organizational priorities and guiding philosophies. As the research assistant (AT5) observed,
The dynamics were . . . interesting. Each of the organizations, so like the CIL, the MCO and the university, all come at it from different perspectives. Like, when I was on the CIL side of things, the [priorities were] disability rights, self-determination, independent living . . . whereas here [on the academic side], we have to . . . balance the two sides. [At the MCO] it’s the servicism. . . . They do have to take their cost-effectiveness into consideration.
MCO Representative 1 (MCO1) was cognizant that different perspectives led to tensions within the team. For example, although she recognized that OP–ENS could help their consumers, she had an obligation to ensure that the project activities aligned with the MCO’s organizational priorities:
One group wants it one way . . . one group wants it another and if you don’t do it this way, then we’re not playing nice in the sandbox. . . . I felt some of that, like, oh, “We can’t be partners, because we’re saying you’re an MCO and you’re saying what about the consumer control.” The fact is even though [we are] non-for-profit, we are a business and we’re in the business of making sure people get health care . . . not peer support.
The academic leadership grappled with what the emerging tensions meant for the collaborative relationships and the project overall. Academic Team Leader 1 (AT1) described the challenges associated with negotiating these tensions, including how to respond to side conversations in which either the MCO or CIL teams vented concerns directly to her rather than sharing them with the whole team:
If there was one thing that surprised me, it was the complexity of the dynamics that constantly needed to be attended to and negotiated. . . . When you have people telling you different things, too, it’s like, “Okay, what do I say in the next meeting?” [How much] of this is like one of those “Oh, just between you and me [kind of situations]?”
Although each group recognized that power dynamics were inevitably influencing the collaborative team processes, each member situated them from and interpreted them through their unique organizational lens. For example, AT1 described the challenge of reframing tensions as advocating for organizational priorities rather than as a personal critique of her and her commitment to disability health equity:
Are they ever going to trust us?. . . Some of it is you’re not the disability community. So, are you going to create something that is disability community oriented or kind of true to the values of the independent living movement? I think that I work really hard to be true to those values and to try to be collaborative in that way. I’m certainly far from perfect at it. . . . Sometimes it gets wearing to always have your intentions questioned, especially after over a decade of working together.
The CIL team members, however, tended to point to external factors, such as the MCO’s desire to protect the status quo within a corporatized health care environment. For example, CIL1 alluded to this:
I think [members of the academic team] underestimated all of the explicit [and] implicit tensions and forces that work against a research project like this. And like I said there were people [who] were threatened by this project inside an MCO. They’re not going to tell you that.
These were some of the team members’ experiences. Mistrust across organizational partners impeded open communication and resolution of these tensions.
Communication Structures
Relationships among partners are important aspects of CBPR work, but communication among diverse team members was fraught and required time, flexibility, and understanding to facilitate. AT2 recalled how this affected the amount of time and consideration the leaders put into planning for team meetings:
Even though we thought that all these relationships were built on trust . . . it seemed as though we, as the academic team, needed to constantly educate and remind people of the collaborativeness, what it takes to do this kind of work. . . . We would strategically talk about how we were going to present things, and how we were hoping things were going to go, before the meeting, and then we would debrief after the meeting.
These efforts were not evident to other team members, yet without this hidden labor it would not have been possible to nurture and sustain the partnership and continue to make progress toward the project objectives.
Given that the project was a collaboration across multiple organizations, the communication structures relied heavily on teleconferences, which compromised relationship building. Unfortunately, team members were not often forthcoming in their communications, especially in the large group format, as the following quote from AT5 indicates:
People aren’t honest across teams always. This is what also causes problems. It’s really hard when you’re across three different organizations, because like it is a lot easier for me to walk into [someone’s] office. . . . But when you communicate over email and you have to physically pick up the phone, tension rises.
To manage the emerging tensions and continue to move the project forward, the academic leadership team implemented mitigation strategies, including reorganizing the team into working groups that focused on distinct aspects of project development and implementation. However, partners such as MCO1 reported that this division of labor made them feel disconnected from the overall process:
The academic team would meet with the CIL individually for curriculum development and then meet with us. If it’s truly collaborative, you need to meet with everybody together. . . Face-to-face contact really opened raw communication.. . . If this is going to work, we need to sit face to face.
This subdivision of labor had the unintended consequences of replicating systems of oppression whereby members of the disability community felt their expertise was inadequately integrated into the process. AT5 drew on her experiences as a PWD to recognize that
I have experiences of when people just like put you to the side or they don’t value you because you’re disabled, or they value you less once they figure out you’re disabled. . . . I’m really sensitive to that. Like, if people aren’t being heard, that escalates really quickly.
The reduction of whole-team meetings unintentionally limited team members’ sense of belonging. As CIL2 explained,
Because of the lack of calls, at least for my part, I don’t feel as connected to the project as I did. I expected that to be the case to some extent. But, we are invested in it and do want to see it succeed.
We learned that, for our team, regular team meetings and communications are important both for getting the work done and for sustaining engagement and community buy-in. Fostering this sense of ownership can have important implications, especially if community partners are being asked to support community outreach, recruitment, and dissemination efforts.
Addressing Distinct Priorities
The emphasis and focus of project activities needed to be negotiated. The academic team emphasized the systematic development of a manualized evidence-informed intervention, including a heavy emphasis on training and recruitment of navigators. Community partners such as MCO1 wanted rapid deployment of the project because the MCO was eager for PWD to receive beneficial navigation services:
I think I’ve just learned . . . waiting on an IRB takes a long time, more than I was prepared for. I was like, “Okay, let’s jump off and do this!”. . . My brain doesn’t work as a researcher . . . I’d like to get to the point that it’s not a research study, [that] it’s implemented somewhere.
All partners struggled to reconcile the desire for implementation with the pace of research. Regular reminders were needed to ensure that team members recognized that these checks and balances, though time consuming, were essential to protect the integrity of the intervention, the rigor of the research, and the rights of the participants. Frustration about the pace was especially pronounced for people accustomed to the rapid mobilization of advocacy work; however, evidence of the program’s feasibility, acceptability, and efficacy would be required before the MCO could scale the intervention to a systemwide approach. There was a constant need to balance scientific rigor with ensuring that the disability community’s ideas were respected and implemented. AT5 described her role in communicating this tension across groups:
We can’t just make changes the second someone suggests it, like maybe some people want to. That’s challenging. Because then you have to explain, “I want to find some way to express to you that I value your opinion and I think it’s a really good idea, but we have to go through this IRB, and we have to judge right now whether it’s worth it to do that and why it’s worth it to do that.” So that causes tension, too.
The slow pace of research and the requirements of regulatory oversight risked creating the impression that disability community partners’ ideas were not respected. As a member of both the disability community and the research team, AT5 was able to identify and address this tension.
Role of Bridgers and Trust Brokers
Having PWD as key personnel at all three collaborating entities was perceived by all participants to be a strength of the project. Including people who were part of the academic and MCO teams who identified not only as PWD but also as members of the independent living movement enabled them to bridge organizational and ideological differences across collaborators. CIL1 described the importance of team members who understood disability community perspectives and had research and clinical expertise:
One of the things that helped a lot was that we were working with [a disabled] research assistant. [She] was just very invested in the independent living movement. . . . She knew about first-hand experience. We had not just academics, but we had people [who] were living with disabilities, and they knew the movement.
Many team members, especially those who bridged multiple roles and identities, engaged in hidden work to make the project successful. For example, MCO1, who identified as a PWD, described using her position as an MCO insider and a PWD to facilitate recruitment. She was uniquely able to explain the benefits of OP–ENS to her coworkers who were responsible for referring MCO consumers while also conveying the benefits of the intervention to potential participants:
You need these liaison people everywhere. . . . When I say “liaisons,” these are people with the lived experience and they have a disability with having a fairly high level of either experience or knowledge of the interaction between health care and disability. . . . I think it gives authority and credibility and urgency to the project.
The willingness of the team members to engage in this bridging work added credibility to the intervention itself and to the process as a whole. This credibility transcended the project team and facilitated community outreach and recruitment during subsequent phases of the project.
Shared Vision and Passionate Commitment to the Work
In spite of the challenges, the team’s deep commitment to collaboration enabled them to move forward by flexibly recalibrating to respond to emerging issues both within the team and with the identification of community needs. CIL1 indicated that she appreciated the academic team members’ commitment to collaboration:
[The academic team was] never top down. They were receptive to any kinds of suggestions that we made to equalize, level the playing field. . . . One thing they are outstanding at is recalibrating. Listening [to] feedback . . . delegating to the right people . . . and reaching out to make sure that we’re included. . . . That’s huge.
The team’s focus on equity was central to the collaborative process and working relationships that support this project. Equally important to the project’s success was each team member’s passion for the long-term goal of health equity and access for PWD:
Everybody is deeply committed to this project and passionate about it. I think we all really believe in what we’re doing and, bottom line, that is what keeps people moving forward . . . that the work feels important and the work feels meaningful. I think there is a general belief that something kind of special is happening within this project. And that it has potential to have an impact. . . . Something kind of cool is happening. (AT1)
Deep commitment to a shared vision and belief that the work was important and potentially transformative helped the team members work together. The ability to sustain and grow partnerships is essential for research that seeks to address long-standing health disparities experienced by members of the disability community.
Discussion
Disability studies is a field of critical inquiry that emerged from the disability rights movement. It seeks to redress systems of oppression, including academic research that positions PWD as the targets of clinical interventions rather than as their creators. Occupational therapy research and practice, though founded on principles of social justice (Frank & Zemke, 2008), is not exempt from critiques of unequal treatment of PWD and aversive ableism (VanPuymbrouck et al., 2020). Indeed, occupational therapy practitioners continue to grapple with how to integrate disability studies into their practice (Heffron et al., 2019). As the profession moves toward realizing AOTA’s (2016) Vision 2025, there is an increased focus on population health interventions that creates opportunities for authentic collaborations with PWD. CBPR aligns with disability studies principles and provides a framework for collaboration between disability community partners and occupational therapy researchers.
This ethnographic study highlights that even productive, equity-focused, and trust-based collaborations are not without tensions and that collaborative processes must be intentionally and continuously nurtured over the course of developing and implementing community-based interventions. The CBPR literature is replete with discussions of the importance of building academic–community relationships that are equitable, meaningful, and sustainable. We examined our team’s group dynamics and relational processes to unpack some of the challenges and paths forward for CBPR involving equitable collaborations between occupational therapy researchers and disability community partners.
Building and maintaining trust, establishing a shared vision, and respecting partners’ contributions are key to developing successful relationships in CBPR (Frerichs et al., 2017; Kwon et al., 2018; Rhodes et al., 2018; Wolff & Maurana, 2001). Our team benefited from a foundation of trust among the academic and community partners that was based on our long-term collaborative relationship. We balanced our commitment to full and equal participation in all phases of the research process with our clinical and scientific occupational therapy lens as we sought to develop and implement a manualized, evidence-informed intervention. Nevertheless, positionality, power, and privilege emerged as tensions and had to be negotiated throughout. Flexibility, mutual respect, the ability to recalibrate, and a profound commitment to the project’s aims enabled the team to move forward and for OP–ENS to succeed.
Power sharing is a pillar of CBPR (Camden et al., 2015; Curry-Stevens, 2012; Newman et al., 2014), but it is challenging to achieve and maintain. Positional tensions, created by real and perceived power hierarchies among partners, may inadvertently replicate systems of oppression and compromise CBPR processes (Curry-Stevens, 2012; Kwon et al., 2018; Minkler, 2005). It may be more productive to recognize power as something diffuse that shifts as collaborators assert their power by adopting a variety of adversarial and collaborative stances to create alliances around issues of importance to their organizational priorities. Occupational therapy training, research, and practice remain embedded in the hierarchical power structures of the health care system (Green et al., 2017; Okpala, 2020); thus, disability studies–informed CBPR researchers must critically examine their implicit biases and understand how these inform the execution of CBPR.
Academic partners are typically the official recipients of federal grants, which come with legal and fiduciary responsibilities for ethical execution. As such, they serve as the de facto project leadership. In this study, we found that with that leadership came a tremendous amount of hidden and emotionally demanding work to manage emergent tensions while fostering equitable collaboration. Assertions of positional authority must not be used to gloss over legitimate differences of opinion that emerge regarding the execution of the project, such as those related to the pace of the research, the scientific rigor, and the focus of project activities and effort (Ahmed et al., 2016; Gustafson & Brunger, 2014; Kwon et al., 2018; Rhodes et al., 2018). Transparent and honest communication was essential to acknowledge and address these tensions and enable the project to move forward (Ahmed et al., 2016).
Within the context of our team, the role of liaisons who were members of both disability and academic or clinical organizations played an essential role in facilitating and bridging organizational perspectives (McDonald & Stack, 2016). Of high value was the inclusion of PWD in key roles on the academic and clinical teams so that disability perspectives were diffused across collaborating entities rather than siloed in a single partner. This bridging role comes with an emotional toll given that people must deftly negotiate multiple identity statuses. Support should be provided to prevent burnout and ensure that team members are not pressured to take on a disproportionate burden of negotiating across constituency groups. Consistent with the CBPR literature, the team’s ability to coalesce around the goal of implementing a PHN intervention to address a significant community-identified need helped the team continuously and flexibly adapt to address changing circumstances as well as competing priorities (Wolff & Maurana, 2001).
Limitations
Although this ethnographic study has numerous strengths and sheds light on the processes of conducting equity-focused collaborative research with disability partners, occupational therapy researchers, and MCO personnel, it does have some limitations. Participants in the ethnography were involved in interpreting and presenting the data. This may have introduced bias that was based on participants’ insider knowledge of group processes. This limitation was mitigated through the roles of authors (Angell, Ferlin, and Ricardo D. Ramirez) who were not part of the project development and implementation team. The use of reflexivity and member checking and the inclusion of CIL partners as coauthors helped ensure that academic partner perspectives were balanced. Our findings are context specific and not directly generalizable across settings and contexts. Future scholarship should continue to bring to light the challenges and successes of CBPR collaborations to build the capacity of the next generation of CBPR partners.
Implications for Occupational Therapy Practice
The findings from this study have the following implications for occupational therapy practice:
A collaborative and inclusive team effort—comprising stakeholders in the domains of disability, clinical practice, and academics—is required to develop and implement tailored, population-level interventions to promote health management and health care justice for PWD.
Occupational therapy practitioners should intentionally work toward renegotiating power dynamics and build equal, productive relationships with disability communities. This is a continuous and gradual process that includes flexibility and responsiveness.
Occupational therapy practitioners and researchers should be aware of systems of oppression experienced by PWD and disability organizations and avoid replicating these practices. Transparency and clear communication are essential to this practice.
Occupational therapy practitioners and partners with disabilities serve valuable bridging roles between the clinical and academic entities and the disability community. It is incumbent on the profession to purposefully promote the recruitment and retention of PWD into the profession (Heffron et al., 2018).
Conclusion
CBPR is an equity-focused approach to addressing health care disparities experienced by PWD that aligns with occupational therapy’s commitment to social justice and disability studies’ demands that PWD play leadership roles in research and clinical practices that influence their lives. Even within highly functional and deeply committed CBPR teams of occupational therapy researchers and disability community leaders, tensions can emerge that risk derailing collaborative processes and unintentionally replicating systems of oppression. It is incumbent on all partners to intentionally nurture equitable relationships through open shared governance, clear communication, and recognition of the fluid nature of power dynamics. By critically examining the OP–ENS project team collaborations, we shed light on the complex processes in CBPR. We strongly encourage other CBPR and occupational therapy researchers to embed critical reflection of their research process and team dynamics into their future research studies. These findings can guide occupational therapy and rehabilitation researchers who are committed to advancing disability studies–informed occupational therapy.
Footnotes
Acknowledgments
This project was supported by the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR; Grant 90RT5027). Amber M. Angell’s effort on this research project was supported by a grant from the U.S. Department of Health and Human Services (DHHS), Administration for Community Living (ACL), NIDILRR Postdoctoral Training Grant 90AR5023-05-01. The contents of this work do not necessarily represent the policy of the DHHS, ACL, or NIDILRR, and readers should not assume endorsement by the U.S. federal government.